The Importance of Reaching Out

You may have some work to do before you see your situation as a beginning rather than an end. Standing in the way of a positive attitude may be mistaken beliefs you hold, beliefs as to what your child's condition implies about you and your spouse.

Your next task is to look squarely at these misconceptions and see them for what they are, for while the stress of coping with a child's neuromuscular disease can bring a husband and wife closer together, it also can drive them apart.

Parents often develop the superstitious conviction that their child's illness is a punishment for something they have done. You may not be aware of these thoughts and yet feel guilt-stricken for no logical reason. Your underlying thought may be, "What's wrong with me, with my spouse, or with both of us that we brought this disability upon our child?" Or, in another version, "Either I, my spouse, or both of us are failures as parents because of our child's condition."

Ideas like these influence your feelings about your spouse and children and affect your behavior toward them. Although wholly without justification, such beliefs give rise to depression, guilt, and blame, the more so if your child's illness is an inherited condition.

If you are to maintain the caring relationship that is the foundation of your marriage, communication between you and your spouse must open up at this time. Allowing feelings of guilt and blame to cut off your support of each other can threaten your future together. You need to work through your feelings jointly if you can. By reaching out to each other, crying together, sharing your pain, you strengthen the bonds between the two of you and create for yourselves a safe and secure space in your relationship.

Husband and wife are likely to face separate emotional reactions to their child's illness. If the disease is transmitted through a defective gene carried by the mother, as it is in Duchenne muscular dystrophy, she may experience profound feelings of guilt. Although, clearly, a genetic disease is no one's "fault," she may blame herself and think that others are blaming her, and her feelings may drive a wedge between her family and herself. A father, especially if the child is a boy, may have a great difficulty accepting the fact that he has a son with a disability who will never be able to do some of the things fathers want their sons to be able to do.

Because men in our society are brought up to suppress their feelings, the father may find it very hard to cope with them now.

If you and your spouse need help in standing together at this time, it's important — both for the two of you and for your children — to turn to a physician, member of the clergy or other professional who can offer you guidance. Your efforts to understand and support each other in this initial period of stress will pay dividends later.

At first, I was very negative, and my husband was very positive. It tended to kind of drive us apart because he couldn’t understand me, and I couldn’t understand him.

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My wife and I had been unexpectedly launched into a world no parent could imagine. But it was clear we needed to reach out. This was too hard a situation to try to manage on our own.